What is one thing you want to experience in life?

[DeLois Tweedy]

Wow Jen, this is hard – to only pick one thing. The first thing that comes to mind is something I’ve said for many years. I want to go to Hawaii. I doubt that I will ever make it there – but as you said, we can dream, if only for a little while.

I love tropical foods (though I am allergic to pineapple; I sub with mango) and I often listen to ocean waves at night when I can’t get to sleep. I think that is my favorite sleep sound. Just sitting on the beach is therapeutic for me, though I don’t get to do that often. This may be as close as I ever get to Hawaii!

[jen-cueva]

Hi @deetweedy, it is a challenge to name just one thing. I’ve also always wanted to visit Hawaii and Australia.

Like you, I LOVE the beach. That’s why I live in San Diego. A few weeks ago, we went to the beach so I could lie on my blanket and do nothing but enjoy the sounds and smells. Fresh beach air is also therapeutic; the beach is my happy place.

We are within 15-30 minutes of about 4-6 beaches. I’ll think of you next time we head that way.

We also have a sound machine that we fall asleep to. Usually, it’s beach sounds or thunderstorms.

[Colleen]

@deetweedy you know what, I think Hawaii is on my “wish I could” list too. It’s always been Ireland I’ve wanted to visit but the more I hear from friends who have vacationed in Hawaii the more it sounds like heaven to me!

More than likely the closest I will ever get to Hawaii is eating my favorite Hawaii kettle style potato chips.

[Jimi Mcintosh]

I want to have a solid month of good health with no pain, breathing issues, no new diagnosis’s. A week of walking a mile and playing baseball with my grandsons, no worries over “did I take all my meds “.  I have so many competing illiness’ that I don’t know which is worse, thru prayer, I am still here.

i knew 9 years ago that PH (PAH) os a terrible disease that mimics other diseases. It is hard to diagnose, leaves you with many lows and few high’s. A lot of research is being done and when I read about we cancer, lupus, dementia and asthma treatments, all of these may lead to new PH treatments that will prolong life and minimize suffering. My original 6 mos has been 9 years and now I worry more about dialysis and heart disease than respiratory failure from PH.  Thanks to everyone on this site for taking this walk with me.

[jen-cueva]

Hi @jimi, you are dreaming, and I love that you want to be free of pain and breathing difficulties. Running and playing baseball with your grandsons touches my heart, and I bet they wish the same. I hope that thinking about that possibility made you smile, even if for a brief moment.

Thank God for your nine years and prayers that you have many more years ahead of you, my PHriend.

In the 18 years since my PH diagnosis, the ongoing research in PH and new treatments has been incredible. Like you, I hope better treatments will help offer us much more relief in the future.

While we are dreaming, I want a cure for PH and all chronic diseases that rob people of their dreams and time with loved ones.

Thank you for allowing us to walk in this journey with you. Take care, buddy.

[Colleen]

@jimi I think of you often and am always happy to see you pop on the forums with an update. I just wish someday you will be able to tell us about relief you are feeling because some new treatment is making a difference!

Do your grandsons like to watch baseball? If they live close enough maybe this summer you can make it a tradition that they come over and watch your favorite team together. Make it fun with special treats and dress to support the team. Just a thought.

[Hall Skåra]

I want to become a grandfather. I guess I need to stick around for a while since neither of my two boys have any girlfriends as the moment. They’re 36 and 32 – it’s time for it now, boys 😉

[jen-cueva]

Hi @hall-skara, that’s too funny. It sounds like your sons must get busy looking for a girlfriend, so your dream of being a grandfather will come.

You made me giggle. My hubby, Manny, is the same way with our daughter. She’s married, and he is ready for a grandson. However, we have a grandpup, and our daughter and her hubby travel and work a lot. They don’t yet see kids in the plans.

I’m ok waiting a bit longer, but I would love to be a Mimi someday.

Maybe we need to sign your sons up on a dating app. Hehe.

[Colleen]

@hall-skara I can tell you WILL be an amazing grandfather. Praying your sons meet there special someone’s soon and that before you know it you will be bouncing babies on your knees!

[Hall Skåra]

Hehe! I have told them not to hurry as I plan to stick around for a while 🙂

They don’t have any lack of interest, though. My oldest, for instance, is a nutritionist (he gives me advice on my PH friendly nutrition) and personal trainer, and in extremely good shape:

https://www.instagram.com/skaara_coaching/

[jen-cueva]

Hehe, @hall-skara, oh boy, can I relate? My daughter is a dietician and competed in powerlifting, CrossFit, and Jujitsu.

I can hear your son already. The other day, I asked my daughter why I was craving sourdough bread with a tad of butter. Her response was, “Mom, you must be freakin’ hungry.” That’s her unique sense of humor, hehe.

Looking at that page you shared, I can relate. I tell my daughter she works out for us both! She’s married, sorry.

[Tracey]

@jenc, I don’t even have to think about this one. I want to be able to walk the dogs again. Long languid walks down to the dam, to play in the shallows that the boys love so much. Then climb the mountain with the boys, and finished off with a casual stroll through my beautiful village. Breathing in the fresh air and soaking in nature and the boys excitement. They go crazy when their dog walker arrives everyday, and I so badly want to be the one taking them out. That and to never see the inside of a hospital again!!

[jen-cueva]

Hi @traceyaustralianmigration-co-za, I hope you and the boys had a relaxing Mother’s Day yesterday.

I can relate some to those dreams. I do walk Zoe on short walks. Manny does the long walks. We have also learned how to do a better family walk with me in my wheelchair. They make these bars that attach to bikes, and we can also get a short one and attach her leash there so she is at our pace.

Since I was diagnosed, I’ve always imagined running up a huge mountain or staircase without any breathing issues.

Never seeing the inside of a hospital again would be awesome! One exception is if it were the hospital or leaving this world, I would want to go to a hospital instead.

This is fun, and I enjoy reading everyone’s dreams. Thanks for sharing. Cheers for a positive week ahead!

[Colleen]

@traceyaustralianmigration-co-za do you by any chance have a scooter or ever thought of getting one? I don’t know what the terrain is like near you but maybe there are paths a scooter could access so you can take your dogs for a walk and enjoy nature as you go?

[jen-cueva]

Hey @colleensteele, what an excellent suggestion. I used a “wheelie,” a motorized chair, early in my PH diagnosis. I did use it to do things with my family and fur babies.

Many scooters have come a long way. They are lighter and easier to fold up and put in a trunk. Not a bad idea to check on this, Tracey.

Darn, that didn’t even pop up in my head. Thanks again, and welcome back, Colleen!

[Debbie Moore]

I would like to live the rest of my days off the tube (O2).  No machine buzzing, no getting caught on door/drawer handles, under the fridge, or whatever the connector on the tube cannot make it past. I could leave the house without being “prepared”.  I could be me again.

[jen-cueva]

Hi @debbie, your wish, and dream to be free of being “tethered” to oxygen is one we could all enjoy! I’ve had times since my PH diagnosis when I’ve needed it 24/7 and other times not. The times when I could use it at night, and up with activity, versus 24/7 was a tremendous sense of freedom.

Yep, it’s also not easy to live a spontaneous life. Before PH, I was that person, and like you, I miss that version of me. However, this new version is more resilient, outspoken, and with much more empathy than I ever thought I was.

Thanks for sharing your dreams. I hope you’re enjoying a lovely week.

[Debbie Moore]

@jenc I never knew the old you  but I sure like the one I know.  I think I need to look for the positives in the new me.  Thanks for showing me yours.

[jen-cueva]

Hi @debbie, you’re so kind, my PHriend! You make my heart smile. I’m incredibly grateful that sharing my journey and experiences benefits you in a small way.

Together, we can always support and learn from each other.

I already love you, Debbie, so I can’t wait to hear what positives you can come up with after your PH diagnosis. Yes, some days are more complex than others to develop these words.

You are loving, thoughtful, and so much more. I bet your “old” self was also so empathetic and kind. <3

[Colleen]

@debbie to live without being tethered to oxygen! I remember all too well how much my son felt the same way.

Are there things that in spite of oxygen you have found you can still go out and enjoy?

[Debbie Moore]

@colleensteele how wonderful to “hear” your voice.  I went to my granddaughter’s concert last night.  When all was quiet between songs, you could hear my portable chugging away.  I guess I just have to accept this. At least I can still get out and about. I will be swimming this summer.  I’ll try out my O2 floaty for the first time.  I’m not sure how long that little cylinder will last but I have six on hand and intend to use every one of them! Thanks for sharing about Cullen’s feelings.  Sometimes I think it is just me being whiny.  Well it is, but, you know, I’m not alone.

[jen-cueva]

Oh, @debbie, I can so relate to the POC making noise. At graduations and other outings, I often tell Manny my machine is so loud that I want to turn it off. But of course, that wouldn’t help me.

At funerals, I felt the oddest when there were moments of silence and I was chirping away. I’ve found that I’m more bothered and conscious about it. Most others never even notice despite me thinking everyone is looking at me.

You’re not alone, my dear PHriend. I look forward to hearing more about your swimming adventures.

[Terry]

HAWAII! What a great place . I want to go. .

Took the boss and three daughters there for a two week no expense spared holiday in 1980 for some r&r after nine months in the outback.We had the best time and for me lots of firsts. Eg.
Driving a car on the wrong side of the road err right side. Watching a tv series being shot ‘Magnim PI ‘ with Tom Selleck  running up the beach at Waikiki ‘ Boss said it was great but I can’t remember.

Buying  a salad roll advertised for $2 and being charged $2.30. What was this extra tax business? Having a limo driver stopping car till I told him exactly where we wanted to go as last aussie family said just up the road and took him to other side of island. Buying a pair of red french bathers  at the Hyatt Waikiki ,diving into the pool and having boss and daughters rolling around laughing when I got out as they  were see through when wet . Two daughters have been back a few times and one actually eloped and got married on the big island. Aloha.

[brenda-denzler]

My ex- was raised in Hawaii. I got to visit there once for a month. It is a beautiful, lovely place, for sure. I’d love to go back.

I had to laugh at all of your “firsts” when you visited the islands. Things we just take for granted, here in the (dis)United States. Sales tax, for instance!

I have to confess that you are braver than I, however. I’m afraid to go somewhere where I’d have to drive on the side of the road I’m not used to. I think I’d become too confused and disoriented, resulting in disaster for myself and everyone driving around me!

[Bridget Reddy]

I want to walk without a walker. I had knee replacement and received a hospital born infection. I’ve had six surgeries and three total replacements. I couldn’t breath well enough to complete therapy I’m on oxygen and crippled. I hate it. I just want to take a walk at the park or down the street! I hunger for it!

[jen-cueva]

Hi @bridget58, I’m so sorry to hear about the infection you caught when in the hospital for knee surgery. That had to be horrible for you to get through. When was your last surgery?

You’ve not been on the forums in some time, so happy to see you pop in again. How can we best support you as you recover?

Walking without your walker sounds achievable. It sounds like you’ve had a plate full of surgeries and recoveries. Can you not do your therapy while using oxygen? Do you have anyone nearby to support you?

[Colleen]

@bridget58 oh no! That is horrible! I’m so sorry that infection happened to you! I know it’s not as appealing as walking but have you thought about getting a scooter? They can be a really nice way to stay independent and best of all, get some fresh air and sunshine.

[Tracey]

1. @colleensteele, I’m so sorry I just now saw your response to my “dream”. I have investigated a scooter, but I live in the country so the terrain is pretty rough. I would need a 4×4 scooter and they are just so expensive. I guess you can add that to my dream list, together with winning tbe lottery 😂